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I am a 29 yr. old wife and mother of two beautiful daughters.  I recently had a baby in June of 08' and that is when my problems manifested.  I was finally diagnosed with severe ulcerative colitis in November of 08' and spent 3 straight months in the hospital.  I was severely ill, in and out of ICU and had to stop breast feeding my baby in order for them to treat the illness.  I was in the hospital and away from my children for  Thanksgiving, Christmas, New Year's, my oldest daughter's & husband's birthday.  I missed so much time with my loved ones this past year.  My body would not respond to any of the drug treatments (Asacol, Remicade, Prednisone etc.) and I was finally forced to transfer hospitals b/c the facility I was at had done all they could.  I have never been so scared or sick in my life.  I was 100% healthy prior to this disease that took me and my family by storm.  

While in the hospital, I was also hit with pancreatitis and developed a blood clot in my leg.  The Doctor's performed several colonostophy's on me and then changed their diagnosis to Chrone's.  They finally did an emergency surgery on me in January of 09' to remove a foot of my colon and left me with an ileostomy.  My rectum was also left in place in case they could reverse the surgery and do a J-Pouch.  It has now been 5 months since my surgery and the doctor's have sent biopsies of my colon all over the country to determine if it is UC or Chrone's.  The last visit I had declared that they believe it is UC but are not 100% sure and hope they are making the right decision.  Please help me decide if I should keep my illeostomy or proceed with having a J-Pouch put in.  What problems have you had with either?  I'm desperate for someone to talk too b/c I don't know anyone in my area that has had this surgery that I can confide in.  I'm scared to death to get sick again and make things worse on my family.  My 2nd surgery is scheduled for July 22nd but I need your help please!!!!!!

 Reply posted for AParson.

Hi, To find out more on j-pouch. Visit the site WWW.j-pouch.org.  I,myself have uc since 2005 and looking for more imformation about UC and surgery. Good luck n praying for all of us....Hope there a cure

 Reply posted for clparrott80.

I am a 32yo Male.I was diagnosed with UC at age 3.I had and emergency ileostomy at 9.I lived for 8 years with the ostomy with almost no doctor intervention whatsoever.Yearly checkups with the surgeon was it. No meds no medical complications.Kid's however can be cruel so that aspect never made it fun.At 17 I decide to have voluntary J-pouch Surgery.I didn't want to live with a bag forever and the doctors all said that since I showed no signs of the disease the surgery would be fine.

 Reply posted for AParson.

I am a 31 yr. old male that was diagnosed with colitis back in feb. 2005. I had flares from minor to severe symptons until the middle of July 2008. By September 2008 I went in for a another colonoscopy, where I was informed that it had extended and was Ulcerative colitis.  I was put on every drug with no results as my condition worsened. By March 2009 I was very sick and underwent another colonsoscopy. Upon waking up I was quickly wheelchaired to a room where I met with my doctor. At this time I was given the worst news possible. I was informed that I my condition was very severe and the disease was nearly spred through the entire colon. I was then immediatley taken to a cancer center, where I was started on my first Remicade treatment. A few days after my I received a call and told that it was showing crohn's. After 3 treatments I was forced to have surgery. I opted for a J-Pouch. I had my first surgery on May 20th, where I received a ileostomy pouch. Since my release I was back in the hospital after only two days. I just recently come back home. I have struggled with the pouch and I am anxious for it to be gone. After the surgery my surgeon informed me that he believed that it was U.C. and my colon needed to come out due to it being very hemmoragic causing sever blood lose.  I will post more after my second surgery.

 Reply posted for clparrott80.

By the way, I wanted to ask you what issues did your doctor's express with the J-Pouch?  I'm trying to gather as much information as possible both positive and negative before I go in for my 2nd surgery.

 Reply posted for clparrott80.

Hi! Thanks for your reply back to my inquiry.  I hate to hear that you are battling this too but on the other hand it's nice to talk to someone who is dealing with the same problems that I am.  My illeostomy has worked wonders for the most part.  I was finally able to start eating again and have managed to start picking up weight.  It has it's down side though.  My skin has recently became extremely inflamed and irritated due to the barrier that is attached to your skin 24/7.  It also takes a lot of mental/emotional adjustment dealing with the new look of your body with a stoma.  That's one of the biggest problems I'm having with it right now.  Other then that, it gave me a second chance at living a half way normal life again.  

 Reply posted for alivein315.

Thanks for your input and response back to my inquiry.  It was so hard for my doctor's to come up with a diagnosis because they noticed a skip pattern within my intestines.  All of their biopsies show ulcerative colitis but the skip areas through them for a loop.  It worries me whether or not they are making the right decisions because they keep saying they'll proceed with the ulcerative colitis diagnosis and HOPE that they are right years down the road.  (Not exactly what I wanted to hear...I'm not a fan of doubting diagnosis )

 Reply posted for AParson.

i forgot to ask you why it was so difficult to diagnose you.  I have Ulcerative Colitis and with colitis, the disease is located in my entire large intestine and does not skip around to different areas..like the small intestine.  Crohn's is known to move from one area of the intestines to the other.  It doesn't stay in just one area.  That is one way to know the difference. Blood tests should also help determine the diagnosis as well.

hi there.  i am so sorry you are going through all of this. 

 Reply posted for AParson.

Hi.  I am also a 29 y/o female with Crohn's who will be having surgery June 24 for a complete ileostomy.  They will remove the colon, rectum, and anus.  My doctors said there were more complications with the J-Pouch.  Also, you will have 2 or 3 surgerys.  How have has teh ileostomy been for you?  Has it been a major ajustment?  Hope what I have said has helped.  Best of wishes.